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  • Help Please!

    Hi,
    I'm a newbie,I have been having problems with my eyes,especially the left one for 10 years already! I was 48th at the time.Back in 2000 I was diagnosed with graves disease/thyroid eye disease.Had about 4 operations to get the eyes back in place.My last operation was May of 2004.From May of 04-nov of 07 my eyes were doing GREAT!!! I woke up last nov 11th with a gray film over the left eye I could not see.I waited,and little by little the sight came back,but I was left with a foreign object feeling! This was on a Sunday.
    Monday off to the opthalomogist,and he said I had a abrasion gave me what ever treatment I needed and said I had to keep my contacts out.Which I did and a week later everything (so he said was ok)Till today I have been back and forth to him every 10 days to 3 weeks! There have been times that I had to crawl in to his office that is how bad the pain was.Now I was told I had corneal erosions coming and going in both my eyes! I have been on restasis.systane/and gen tel onintment at night.Plus I have to tape my eyes shut at night.June 9th went to the Manhattan eye and ear and saw a corneal specialist he told me that the cells that protect the cornea are peeling off.Put me on lomax drops (spelled wrong) and a antibotic.I have no more of that jabbing pain BUT the gritty/dry feeling is drying me crazy! I cannot take it anymore. I have not had contacts in for about 7 months.Can you ever wear contacts again with this corneal eroision thing???
    Is there anything else out there that I need to do! I keep saying since I have an autoimmune disease that maybe another one is lurking around and they have not been able to put their finger on it.
    Any advise would be greatly appreciate!!!

    Thank you so very much
    Loren

  • #2
    First off I am not a recurrent erosion veteran. i had severe ones for three weeks post lasik and I honestly thought I had died and gone to hell. How could anything in the world be so painful. I got a bandage contact lens for 16 days...similar to taping your eyes shut but these were on for 16 staight days.

    Within this time I learnt I HAD to get my dry eye under control or the erosions would continue. I did this through punctul plugs and when the lens came out night time gel.

    I have since been told that I have probably being having mini erosions, these are very very bearable in comparison to severe ones. I have also been told that even when the erosions stop the eye takes time to heal from the trama of the erosions.

    If you look in the home page, and scroll down the bottom of the page you will see details on tips for dealing with erosions....RCE for short.

    There are a couple of people her who are RCE sufferers, goldilocks, and Liz56 are two that I can think of...you could start by reading their posts and reading some of the other threads about erosions.

    Anyone who has suffered a severe erosion know exactly what you are going through....and they are called recurrent for a reason. I have been unable to eat meat since mine happened, the slicing of the meat just hits too close to home. The regular suffers will be able to give you more help on tips. But for me it was the Bandage Contact Lens that made all the difference, just make sure they leave it in for the longest time possible to give the cornea time to heal. With the lens in it will give you a chance to see if you suffer dry eye also.

    I can give you no help on the other health issues you mentioned I'm afraid.

    Best of luck and welcome to the site.

    B.

    Comment


    • #3
      Here is a link

      http://www.dryeyezone.com/talk/showthread.php?t=4908

      Comment


      • #4
        Hi, Loren.

        I'm sorry to hear this. It sounds like you are in the middle of a cycle, and it *does* take some time to get out of it. Your suffering rings familiar to me, and I very much sympathize with what you are going through.

        B's advice is really good and helpful, and the link to Allie's questions and Dr. Holly's responses is a good place to begin.

        Dr. Holly specializes in erosions caused by several different things.

        Your case sounds like it has to do with lid coverage and exposure. Because all cases are different (mine is from a combination of dry eye, failure to close the lid fully in one eye during sleep, and a corneal dystrophy in both eyes), it is useful to consider your case specifically and work on taking precautions that are unique to you.

        Dr. Holly does a good job of explaining how the ocular surface becomes irregular and prone to dryness and erosions, and I'll post his introduction and a link to his article below.

        In addition to using therapeutic eye drops, those set out by your doctor, you may want to ask your doctor if TranquilEyes goggle for sleeping will help to keep the lids closed as a way of stopping the cycle. Of course, if the eyes open too far, the goggles may not help or may be a problem, if the foam touches the cornea. So, that is certainly something to ask about. I suffer from lagophthalmos, myself, and the goggles help me but may not be right for everyone.

        On the issue of contact lenses, I would give them up for now until the erosions are under control. Your doctor may prescribe bandage contact lenses, and sometimes those can have a prescription, though they often do not, depending on the case. Personally, I have resigned myself to being permanently in glasses, because with a sensitive epithelium, I fear injury and infection, and I'm a better-safe-than-sorry kind of person. However, all of us are different.

        Below is the introduction to my favorite article by Dr. Holly:

        "Tear film abnormalities characterizing a dry eye state invariably lead to surface epithelial damage.1 Such a surface damage, however, can also directly result from systemic diseases or excessive contact lens wear.2 No matter what its cause, the affected ocular surface will adversely influence the tear film stability. Hence, cellular surface damage can be secondary to tear film abnormality, such as in the classical dry eye, and vice versa, a pathological ocular surface can adversely affect tear film stability, a condition that may be called a secondary dry eye. Both types of cases are characterized by an abnormal tear film and damaged ocular surface epithelium (Figure 1). Hence, it may be hard to assess whether the initial cause is pathological tear film instability that can be caused by several factors or primary ocular surface disease that again can result from various causes. The end result is epithelial damage that can be assessed by vital staining.

        "There is more than academic interest to such a distinction based on different mechanisms. This argument basically boils down to the adage: "what came first, the hen or the egg?" The difference is subtle but it could influence the type of treatment the patient receives.

        "If tear film instability is the primary cause of the 'dry eye state,' then artificial tears used in the treatment should enhance tear film stability by biophysical means such as increased wetting and the dehydration of the affected tissue. The obstruction of the puncta, especially in case of low tear volume, would also be indicated. The re-established continuous tear film then would create the milieu for the maintenance of a normal epithelial surface.

        "However, if the surface epitheliopathy is the primary event, then the topically used drops should be able to heal the surface epithelium, possibly by the virtue of their nutrient content or other biochemically active component. Over the healed surface, then, a continuous tear film would form. Hence, the biophysical factors in such a case would only play a role in the maintenance of a stable tear film."

        Good luck, Loren. Keep us posted!

        --Liz

        Comment


        • #5
          Hi Loren

          I'm sorry this is happening to you. I have RCEs too, and they're just horrible things. Everyone on this site has been so helpful and supportive - you're in good hands here. I hope things get better for you soon.

          Lisa

          Comment


          • #6
            Thank You All so much for your help!
            You know Bernmee it never dawned on me,that even after the erosions are gone that the eye is still going to need time to heal! When does it end!!!

            Liz,and lisiamc, after a while the only way I was able to describe it,was like having labor pains in the eyes!! that is how bad the pain was! I could hardly stand on my feet! I stayed in my bedroom with no light for 7 months! in a fetus position!
            Never in my wildest dreams would I ever think that eyes can keep you locked up in a house! It has been a nightmare to say the least!
            I am going to take a look at the links you,and B sent me! Thank you so much I really appreciate it!
            I will keep you posted
            PS I also suffer from thyroid eye disease! I did nothing but complain about it for 8 years! It WAS NOTHING to what I am going through now!
            Nothing!

            Thank you all again

            Comment


            • #7
              Wow, seven months of erosions...I thought I was going to die after only three weeks of them. I learnt the difference between agony and pain, and as painful as the symtoms you are experiencing now, just remember that they are no where like they were when you are having the severe erosions. Thanks for the heads up on the labor, as soon as I get this under control I will be trying for my first. I often think that I got through erosions, surely I can get throgh labor pains...I'll keep you posted on that one!

              Anyway some tips on getting you started.

              After I had a Badndage Contact Lens put on for my erosions, I was peeling my eyelid of the lens in the morning and after I few days the lens stuck to my eyeball, amazingly painful, but not as bad as an erosions. So I knew I had dry eyes. I got a bottom punctal plug in, and then a top. It really did make a difference, though I was still in pain.

              After the lens came out I kept the plugs and used dwell and gentel gel at night. I was still having pain, but not agony. Around that time I found this site, and I read just about every post and did everything I could do to help myself.

              Bought a hard back notebook to record all those strange words I had never heard of, and to make a list of questions to ask my dr. as they popped into my head.

              Bought an eye patch to cover my "bad eye"..others use wrap around enclosed glasses, they block out the wind and create a self contained humidity chamber...this to me made a HUGE difference, without it I could feel my eye drying within 5 min, such as when I had to drive.

              Rice baggy from the dry eye store. This had made a huge difference. Before only a showever would ease the pain. But I can carry this any where and ask in a cafe to have it heated up, no coffee though, lots of mint tea instead.

              Got a humidifier for my room.

              Changed my diet to mostly grains, veg, fruit and fish...no alcohol, no processed food....also I take 3 tablespoons of Flaxseed during the day
              Here is link to diet, note the "night shade plants"http://nutrition.about.com/od/dietsformedicaldisorders/a/antiinflamfood.htm

              See an accupucturist weekly who also guides me on my diet.

              Bought the nightime googles.

              Developed a regular sleep pattern and stick to it, no late nights.

              Got Dr. Robert L's book on dry eye from the dry eye store, or you can borrow it from the library. It really does pull together alot that you read on this site, and gets you thinking.

              Thanks to another memeber I suspected I may have MGD so I switched from my Lasik dr. to another recommended by Rebecca...and guess what I do. It was him who told me the eye takes a while to recover from the inlfammation of erosions. He has put me on Doxy for three months in the hope that my glands will become unblocked and therefore allow my eye to recover from Lasik and the erosions, so I will go back to how I was before. With MGD but not feeling or knowing it to any major extent. A side effect of this medication is that it will also help the eye ball bond back together...and help my facial skin that is often flushed looking.

              I'm afraid I can't help you on the steroid drop, I don't know what that is.

              I do know that Acoral...a memeber here from ireland is using an ointment on her eye lash line, she might be able to fill you in on that one.

              Ok so I think that is all the knoweldge i have as of today. It is a learning eperince for us all here. As was said above we all experince dry eye for different reasons so our treatment will be different, but alot of the baove tips apply to anyone with dry eye.

              Keep well and let us know how you are getting on.

              The "open forum" section is a great section for asking questions as you go along.

              B.
              Last edited by bernmee; 25-Jul-2008, 15:17. Reason: More info

              Comment


              • #8
                B,Your such a Sweetheart!
                Thank you so much for taking the time out to help me out!
                You said this is about all the knowledge you have for today! lol
                I should have that much knowledge!
                You are so right about what I am going through how it's a piece of cake
                (so to speak) compared to when the erosions are full blown!!!!
                The corneal specialist said,once we get these erosions under control he will insert the plugs! More to look forward to!
                I think I mentioned this, I patch both my eyes shut at night! I've been doing this since March,funny,but I cannot imagine going to sleep without patching them.Things that I have taken for granted,like going to sleep and just closing my eyes,now that is un heard of!
                I also bought a humidifier for the bedroom.I am also on doxy,been on it since june 9th.I didn't realize the doxy did all that.He wants me to get off it at the end of this month! So scare they will start up again!
                B, I hate to sound stupid ,but what is MGD??? it's not that autoimmune disease is it?
                What is a rice baggy,and where would I find it?
                I don't drink coffee never did thank god! I never smoked a day in my 58 years thank god for that too!
                I am on the same type of diet,but don't yell,I was told by the corneal specialist about the flax seed oil to take it,I do for a few days ,and then I stop. I started with the flax seed oil when I develped thyroid eye disease do to the graves disease.I was taken it ,and then for what ever reason I stop!
                Does it really work B?? The corneal specialist seems to think so,and so does every one at my support group for graves,don't know why I can't keep on it!
                When ever I have to refer to my eyes I say the things above my nose!!
                I don't even want to call them eyes!!!! How I hate them! They have destroyed me in so many ways!!
                Thank you so very much for all your advice I really appreciate it!!
                Trust me the labor pains will be a breeze compared to a erosion that is at it's peak!!!
                I will keep you posted
                Thank you so much!!!

                Loren

                Comment


                • #9
                  Your case sounds like it has to do with lid coverage and exposure. Because all cases are different (mine is from a combination of dry eye, failure to close the lid fully in one eye during sleep, and a corneal dystrophy in both eyes), it is useful to consider your case specifically and work on taking precautions that are unique to you.

                  In addition to using therapeutic eye drops, those set out by your doctor, you may want to ask your doctor if TranquilEyes goggle for sleeping will help to keep the lids closed as a way of stopping the cycle. Of course, if the eyes open too far, the goggles may not help or may be a problem, if the foam touches the cornea. So, that is certainly something to ask about. I suffer from lagophthalmos, myself, and the goggles help me but may not be right for everyone.

                  I have quoted Liz56 above, if you are taping your eyes shut at night then it sounds liek you may have closure problems, that is called "lagophthalmos". I think the tranguileyes night googles for sleeping would help you as they create a self contained moisture chamber.

                  As for the rice bag, you can buy it from the dry eye store on this site. It costs about $25. It is great. You heat it up in the microwave and put it on your eye/eyes. I carry mine everywhere and use it throughout the day, I love the smell of it and us it even when I'm not in pain. And when I am in pain it helps alot, where before only showers worked.

                  http://store.nexternal.com/shared/St...t=products.asp

                  MGD is inflammation of the eyelids
                  http://www.dryeyezone.com/encyclopedia/mgd.html
                  It is one of the many causes for dry eye, I think the trick is finding what is causing your dry eye. As I said you will learn so much on this website. I too am still learning, so please don't quote me on anything!

                  I am taking Doxy for my roseacea that is causing my MGD, the idea is to unblocl the glands. You should ask your Dr. why he prescribed yours...it is always good to know why you are being prescribed something, that way you will get more info on what is going on in your body. Trust me it took me about a month on this site before I learnt to question question question, that way I have the answers when I get out of the Dr.'s chair, as oppose to wishing I had asked those questions.

                  As for the plugs, don't worry about them. I felt one for about 10 minutes and didn't feel the other. I wonder though why he is waiting to get your erosions under control before inserting the plugs. I would have thought that getting moisture in the eye would help prevent the erosions. However I am not a Dr. so don't quote me, however that might be a question for him you can write in your notebook.

                  I think the Omega 3 oil is necessary. I know our modern diet had too much Omega 6 diet in it and not enough Omega 3 and I think this results in inflammation, therefore it is necessary to take the Omega 3 oil. Everyone her swears by it so I am going to take it, no questions asked!

                  And don't forget to drink lots of water. I try drink at least 64onz a day, but try for 100. I have a big bottle that I carry with me so I know how much I have, or have not drank.

                  Dr. Robert L's book will give you a great overview of all the bits and pieces of dry eye....give it a read and you will have so much general information, and then you will be able to get so much more out of this web site.

                  So once again I want to say that I am no expert, I am still learning. But when I read back to my first post and the fear that I felt I can see I have come a long way, and that is thanks to all the help I got from others on this site.
                  Last edited by bernmee; 26-Jul-2008, 11:05.

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